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 appointment date VERY scared :cry:

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emily2405
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PostSubject: appointment date VERY scared :cry:    Fri Apr 15, 2011 12:49 pm

Hi all Smile
as title says i have got my appointment for a lumber shunt and im blooming terrified i know it sounds really silly but the thought of going into hospital scares the hell out of me :roll:

Im being treated at the national hospital in queens square london and have been told this is a great hospital etc
i have a couple of questions for those who have had a spinal shunt


How long roughtly is the recovery period ?
what is the usual time in hospital after the procedure ?
will i be able to walk around after the op ? (what if i need the loo ?)

any tips or tricks before during and after the op ?

Emily xxx
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Heidi
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PostSubject: Re: appointment date VERY scared :cry:    Fri Apr 15, 2011 3:49 pm

Hi Emily hug I totally understand why you're scared about having a lumbar shunt, I was the same when I had my first shunt which was a lumbar one. The recovery period vary's from person to person and you may be only in the hospital for anyting from 3-4 days to about a week or so after the surgery, but again this again varys from person to person and your doctors

At first you will have to use a bedpan or commode until they are happy for you to get up and use the toilet.You will be encouraged to walk around either the next day or within a few days depending on how you are.The area of your tummy and back where they operated is going to be sore and tender for a while, so you might find sitting back with a soft pillow once you get home will help a lot. Don't do too much bending down, and obviously not lifting anything heavy till you feel able too. You might have a district nurse come to take your clips out, which is quite painless, and leaves you with a neat scar, which when it's fully healed, you can use bio oil on to help it fade a little.

The best thing I can advise you to do based on my own surgeries and especially the LP shunt ones, is to take in a good book, magazines, a puzzle book, and a pen, I also took my mp3 player, so if you have one of those or an ipod take that, because the days are quite long when you're in hospital, anything that will keep you occupied and relaxed. I also took a photo of my family with me, so that I kept a constant link to home, even though they were visiting and phoning, it just helped to have it with me

Keep a positive attitude and your sense of humour, and keep telling yourself that the shunt is going to take away those symptoms and pain, and help you get on with your life. If you have anymore questions or anything please ask. hug
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emily2405
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PostSubject: Re: appointment date VERY scared :cry:    Fri Apr 15, 2011 7:27 pm

Hi Heidi and thank you for your reply Smile
i think the thing thats worse is that i only recieved the appointment today and its for the 27th of this month so its all come so quick :(
and worse of all i now live in essex and the hospital is in the city so im sure travelling home is going to be a painfull experience

thank you again you have helped alot
im sure the days running up to the appointment ill be a million times worse lol
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PostSubject: Re: appointment date VERY scared :cry:    Fri Apr 15, 2011 8:16 pm

I know it's quick, but think of it this way, at least you aren't waiting months, that would be even worse. I know this is a very big thing, but in the end it will solve a lot of problems IIH wise. As for the journey home, again a soft pillow for your back, it might be a good idea to get a memory foam one, and make sure that you sit where the seat belt goes over the opposite side of your stomach wound. Then you should be ok. I did the same thing when I had both of mine, because the hospital is in the city centre, and I live in a village on the outskirts.

Also when you go in for your surgery, you can always ask them to prescribe you something to help you sleep, and pre op medication which helps you relax.

for you
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emily2405
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PostSubject: Re: appointment date VERY scared :cry:    Fri Apr 15, 2011 8:41 pm

thank you again Heidi

It cant be any worse than how i feel now i mostly feel like my brain is caving in and what makes it worse is i also have PCOS so suffe with bad tummy pains too
im trying to look on things positive and hope that the LP Shunt works

how often do you need to have it revised ?

i think the 2 main things for me are getting to the loo and my OCD over baths/showers i have at least 3 a day so a bit worried there lol

thank you again and ill keep you updated
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PostSubject: Re: appointment date VERY scared :cry:    Fri Apr 15, 2011 8:53 pm

I really sympathise hug I too have PCO's and they just make it worse don't they! Revision depends I think, my first LP shunt was in for 5 years before I had it revised to a VP shunt. Revision tends to happen if it gets blocked or some other problem, otherwise they're there for a long time. You'll be OK going to the loo and they'll bedbath you at first, and then when you're more mobile they'll let you have a shower. Take plenty of wet wipes with you, you'll feel better for it. I'd also get the antibacterial shower and hand stuff to take in with you.

Yes please keep me updated, and if you need a chat and want to go in the chatbox, pm me when you see me on here, and I'll go in and have a proper chat with you chat
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emily2405
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PostSubject: Re: appointment date VERY scared :cry:    Mon May 30, 2011 4:49 pm

Hi All
sorry its been a little while since i last posted :(
well just a little update really, I had the LP Shunt surgery on the 27.04.11 at the national hospital for neurology and neurosurgery
I was under the care of Laurence Watkin and his team who were amazing and made the whole procedure alot better they kept me informed on everything and was on hand to answer any questions i had

As for the procedure !!!! Oh boy !!
Once i come around the pain hit me !! i have never felt so poorly in my life the headache and pain from surgery was unreal i wished i could go to sleep and not wake up !!! Lots of pain relief later i was taking very slow steps
i must say that although the pain was not nice the ward i was on and the staff were lovely and helpfull
I was able to go home 5 days after the op which is now a month ago and unforutunately the low pressure headaches are still there (not as bad ) and im still in a little pain from the scar on my tummy which is also infected
my sight hasnt got any better but it also hasnt got any worse

But i have noticed a few other things happening since the op ?? I am having alot of trouble sleeping and im now very emotional and moody and feel depressed most days also all of my scar are basically on the right hand side but i have a shooting pain in my left hand side almost like tummy cramp and have been gven laxative by my GP im pretty much 100% sure its not constipation but the GP just wont listen

I just generally feel rubbish i have PCOS high blood pressure and IIH and just want to have a good day once in a while
My next appointment at the hospital is next week so hope to find out more then
Hope that you are all well ??



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PostSubject: Re: appointment date VERY scared :cry:    Mon May 30, 2011 5:35 pm

Hi Emily [You must be registered and logged in to see this image.], I'm so sorry you're having such a bad time, but I do know exactly how you feel, because I was the same after my first shunt which was an LP one. I was very emotional for a long time afterwards, and had the same symptoms you're having, plus my back was very painful and continued to be so for a long time.

The pain in your tummy sounds more like it's related to the infection, which you should get checked out by your Neurosurgeon. The most common infections we get with a shunt are Staphylococcus Aureus and Bacterial Meningitis, which your Doctor should be checking you for.

Here are links to information you need to know about these infections, and whether or not your symptoms match, get you MUST get in touch with your Neurosurgeon as soon as you can. Please let me know how you get on, but contact your Doctor first.

Staphylococcus Aureus

Bacterial Meningitis
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